The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Followers

Saturday, November 19, 2011

Those of you in Southern California who can reasonably do so, please make yourselves visible in and around Dr. Judy's hearing, Tuesday, November 22 at 1:30 PM in Department 13 of the courthouse in Ventura, California.

Please remember this is a courthouse and proper decorum must be observed if you are going inside. Dress nicely; jeans are permissible but generally frowned upon.

A small, tastefully-worded sign (8x11 cardstock) "may" be permissible in the courtroom at the judge's whim, but please keep larger signs on the sidewalk outside. Please refrain from any emotional outbursts in the courtroom; listen quietly and politely to the proceedings and don't audibly call anyone a liar. Profanity on your sign or out of your mouth will almost certainly get you thrown in jail for contempt of court. Your goal is to protest what's being done to Judy, not to become her cellmate.

If this country is truly "founded on Christian principles" as some claim, then caring for the poor and disabled should be our highest priority, not "if there's any money leftover" after killing foreigners and rewarding the rich by giving them more money. In no court in this country, other than when going before a Disability judge, is someone considered guilty until proven innocent. But we are required to prove we're not committing fraud, rather than the government being required to prove that we are. All that for a check that's often less than minimum wage.

... so called 'mainstream' doctors now appear to be the real quacks after all.

ME/CFS has been emerging over the last decade or two out of the realm of controversy and into one of pseudo-controversy. The trick in pseudo-controversies is (a) remain ignorant of progress (b) ensure that everyone else thinks there is nothing new.

Thus, pseudo-controversy advocated become the real quacks, whilst in reality, ME/CFS enters mainstream. To be a strong pseudo-controversy advocate, it is forbidden to read any information that might not support your position, so matter how much of it there is.

... I submit that it would be hard, tedious and mind boggling to have to read through some 4,500 peer reviewed papers in order to objectively consider the reality of ME/CFS, especially when you've never really paid attention to a genuine ME/CFS patient's complaints. Doctors are at their sharpest when they are in training for their specialist examinations. After that, what they are inclined to read, essentially speaking, is what interests them or peeks their curiosity. And so the decline begins (usually).

To exclude ME/CFS from the medical school curriculum therefore, is tantamount to a criminal act against humanity. Thousands and thousands of people will suffer. There will be no other time in their medical training where students might get a chance to even hear about ME/CFS, let alone be moved towards studying it further, whilst their minds are fresh, young and absorbent.

... In experienced clinician's hands, the diagnosis Is NOT one of exclusion, as uninformed unread misguided skeptics (UUMS) would have us believe. The concept of a Functional Somatic Disorder, in my mind, is dead.

So, if it clinically walks like a duck, quacks like a duck, then in all probability, it is a duck (ME/CFS). The same applies to those so-called mainstream quack doctors who would have us ban ME/CFS research. They are UUMS's. Um!

Why is it that CFS patient support groups -- mostly laypersons -- can diagnose (or rule out) CFS with near 100% accuracy and doctors cannot? Not because (as the doctors would have you believe) "it's too hard to diagnose", but because we LISTEN. We know what we're looking for because we see it every day. We're not fooled by the people who are tired because they ran a marathon or worked 100 hours a week. We know to listen for "I woke up, brought in the newspaper from the front porch, and had to take a nap before I could read it." We expect to hear stuff like "I drop things" and "I can't see clearly" and "I can't add 2+2 without a calculator", and not just "I cry all the time". Fever, rash, joint pain, swollen glands ... those CFS symptoms don't appear in depression.

On the other hand, if all you're complaining about is "sad" and "tired", I'm going to steer you right to someone who will assess you for depression, because you're not talking about what I have.

Note: For those who have not had a chance to read Ms. Hillenbrand'sgraceful blending of facts and courage this is a must read. As well,this is the kind of book that can be read one chapter at a time ifreading long novels is cognitively difficult.

Inside the ListBy GREGORY COWLES/ New York TimesPublished: November 18, 2011

'UNBROKEN' STREAK: Happy B-day — that's B for "best seller" — to LauraHillenbrand, whose book "Unbroken" has now spent a full 52 weeks onthe hardcover nonfiction list: long enough to sit up and respond toits name, according to that other perennial best seller, "What toExpect When You're Expecting." "Unbroken" tells the story of LouisZamperini, an Olympic runner who was taken prisoner and tortured bythe Japanese during World War II. It entered the list at No. 2 lastDec. 5, just below another book about war and torture, George W.Bush's "Decision Points," and just above Jay-Z's "Decoded."Hillenbrand's book has outlasted more than a hip-hop star's and atwo-term president's, though. Impressively, it's also vanquished herown previous best seller, "Seabiscuit," which logged 30 weeks on thelist back in 2001-2 before making way for the paperback edition. We'llnever know whether Man O' War could have beaten his grandsonSea­biscuit, but now we have proof that Prisoner O' War can.

"Unbroken" received near-unanimous praise when it was published lastyear, and unsurprisingly, it has also fared well in the court ofpublic opinion. Out of some 1,860 Amazon customers who had weighed inat press time, an astonishing 1,613 gave the book five stars, comparedwith just 33 one-star ratings. Not bad for an author whose chronicfatigue syndrome is so severe she once went two and a half yearswithout leaving her house. Even Zamperini found her strugglesinspiring: "I sent her one of my Purple Hearts," he told TheWashington Post last year. "I said, you deserve this more than me."

Of course CFS is a particularly harmful diagnosis for children. The term could not be more dismissive if it had been created by a focus group. Chronic as in chronic complainer, Fatigue as in "Yeah, I've been a bit tired myself lately," and Syndrome as in Fad Diagnosis.

But it is the name that, thus far in the United States, we were GIVEN. No one asked for it and no one likes it.

The question is not who prefers CFS over M.E. Nobody does.

The question is how do we get those in authority, and in a position to control our lives - doctors, government agencies, employers - to quit using the name (or what it always ends up as, "chronic fatigue") and shift to something respectful and meaningful.

There is no use debating how to lead the horse to water. It is refusing to drink.

And as Lenny Jason has shown aptly over the years, the definition is equally important.

The ME/CFS campaign goes hand in hand with the Canadian Consensus Criteria. The CCC was created in 2003 after Canada adopted its own clinical manual for ICD-10, called ICD-10-CA, which puts CFS and M.E. together in the tabular version. They brought together about 20 clinicians from different nations, including the US, and hammered out a very good definition to go with the new name.

Those of us who have favored the name ME/CFS do not do so out of any love for or nostalgia for "CFS". Rather, we are trying to accomplish two goals:

1. Teach those in a position of power over our lives that most of us actually have M.E. - certainly, had the Incline Village and Lyndonville outbreaks occurred in England at the time, they would have gotten the diagnosis of M.E. But they were in the US, and Washington/Atlanta annointed them first with CEBV, then with CFS.

M.E. as a disease name was virtually unknown in the US because we had used Epidemic Neuromyesthenia when the UK and British Commonwealth adopted Myalgic Encephalomyelitis in the 1950's, when atypical polio no longer seemed appropriate. We need to teach those in power about Myalgic Encephalomyelitis so they can, in the NEXT step, dump CFS entirely.

In that context, the adoption by CFSAC of the name ME/CFS is progress towards abandoning CFS altogether.

2. We want physicians using the CCC for diagnosis, not the Fukuda definition. Since the name ME/CFS is used throughout the CCC, it also helps take them towards the next step, dropping CFS altogether.

Yes, there is now a new published definition for M.E. But in the US, it does not help with those in power over our lives if they refuse to use M.E. in the first place.

When I write about the disease, I try to use the phrase "patients with M.E. or a diagnosis of CFS," but that is clumsy to use in every sentence, so it ends up shorthanded to ME/CFS.

Better than "chronic fatigue."

Mary M. Schweitzer

* * *

I agree with Mary. I've been assaulted on any number of occasions for using CFS Facts as the name of the website and the e-group. Those of you who've been in the CFS community for a long time probably know to google ME, but someone who's just been given a diagnosis of CFS won't know that. And, make no mistake, in the US, 99.9% of patients are going to get a diagnosis of CFS; only the most militant of doctors will buck the CDC to call it ME.

So, do I use the name they've been told by their doctors, and educate them? Or do I insist on calling it ME, and only ME, and lose the opportunity to catch the newly-diagnosed?

When doctors stop diagnosing CFS, I'll stop using the name. I hate the name myself, and have since my diagnosis was changed in 1988. But I was told that if we didn't play CDC's game of calling it CFS, my insurance company wouldn't pay; working only 2 days a week, I was in no position to stand up and declare "call it by its right name and I'll pay the bills myself!"

It is what it is, and going on a quarter-century of patients and experts *itching about it still has not gotten the name changed. I can waste energy tilting at windmills trying to get the name changed, or I can use my limited energies more wisely in trying to raise funds for research.

"The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name." -- Katrina Berne

Today "Unbroken" celebrates its one-year birthday on the New York Times' hardcover nonfiction bestseller list. Congratulations Laura Hillenbrand, an inspiration to so many! _http://nyti.ms/ssYIOe_ (http://nyti.ms/ssYIOe)

Artificial sweeteners especially aspartame has gotten a bad rap over the years, most likely due to studies showing they cause cancer. But not to worry Ajinomoto the company that makes Aspartame has changed the name to AminoSweet. It has the same toxic ingredients but a nice new sounding name.

Monday, November 14, 2011

"Grants can go to doctors, community groups, local government and other organizations that work with patients in federal health-care programs such as Medicare and Medicaid. The funds are for experimenting with different ways to expand the health-care workforce while reducing the cost of delivering care. There will be an emphasis on speed, with new programs expected to be running within six months of funding."

The Obama administration will announce Monday as much as $1 billion in funding to hire, train and deploy health-care workers, part of the White House's broader "We Can't Wait" agenda to bolster the economy after President Obama's jobs bill stalled in Congress.